Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.

IZEA

45e38fe4f37dbb7d7816d217703971713d18d2562e71754a8f

Thursday, March 30, 2017

Okay. As a PWD who loves living in the community and not in an institution -- there are hurdles and challenges, as we all know. It is due to these challenges, that activists before me blessed me and other PWDs with the passage of the ADA [Americans with Disabilities Act of 1990]. Before the ADA, PWDs were largely confined to their homes [IF they were lucky enough to have a support system that allowed them to do that] and a limited number of places that just happened to have an entrance without steps, elevators and wide enough spaces to maneuver a wheelchair.So the concept of the ADA was born many years before 1990, and I am grateful for the activists who fought tirelessly for the bill's passage a good 14 years before I would need it. At the time the ADA was passed, I was an airline sales manager who attended many meetings with travel agents who were very vocal about how "unfair" it was that they had to comply with the ADA and put ramps at their entrances and retrofit their restrooms to be ADA-compliant. Let me be honest: during this time, I was wearing a size 4, walking with heels and working out at a gym 5-6 times a week. Although I was sympathetic with PWDs, I never dreamed I would ever need use of a ramp or a grab-bar. I'm a little abashed to say that I could see both sides of the argument: I knew it was important for PWDs [which I called "handicapped" at the time] to be able to enter places of business, but I could also sympathize with small and privately-owned businesses that had to shell out tens of thousands of dollars to make structural changes for the one or two wheelchairs a year to grace their premises. After all, PWDs who lived in the community were not as common as they are today. Couldn't they just send a friend or family member to do the errands for them? This was also a time when airlines were cutting travel agents' commissions, and airline and travel industry forecasters were predicting that some day down the road, travelers would be able to book their reservations and even print their own tickets and boarding passes on personal computers in their own homes! So travel agents were livid at the prospect that they could be obsolete one day. This ADA was the icing on the cake. I got it.Fast forward to the present. How many people use travel agents? How many travel agencies still exist? And we all know the impact of the ADA: ramps, curb-cuts, automatic push-button entrances. We still have a way to go: I still have to send an aide into my local bagel shop and Chinese takeout because they have steps at their entrances. And I have even blogged about doctors' offices where I had my breasts examined in hallways -- see my post of Friday, August 21, 2015 [I avoid those now]. We can now sue those establishments that remain inaccessible [I haven't had the time to take on the bagel baker, the Chinese takeout or the pizza shop that put down a hazardous concrete "bump" -- I've had to choose my battles].There remains a huge obstacle -- visiting friends. I cannot visit most of my friends. Even with a portable ramp which only goes over one step, I still cannot visit most peoples' homes. I'm getting tired of hearing "I would love to invite you for Christmas/ New Years/ Easter/ Passover/ my kid's birthday party/ my birthday party/25th anniversary party/ to hang out and have dinner......fill in the blank. It's bad enough that even if I could get in, I can't use the bathroom, which is often too small to fit my wheelchair and never has grab-bars. I start to wonder "Is this a handy excuse?", but in most cases, I know it's not; in most cases, I know these people would like to have me and don't want me to spend holidays alone, or to bring leftover food or birthday cake to me after-the-fact. Even my own sister and her family invite me for Thanksgiving every year and have to carry me up six steps in my manual wheelchair. What do I do? I don't expect them to change the venue just because of me; they want to hold a celebration in their own homes and it's not their problem if I can't get in. How about this? There are people whom I met since I became a wheelchair user and/or have moved in the last 13 years, whose homes I have never seen and never will see. "Visitability" is still a hurdle to deal with. If I could afford to install an elevator at my sister's home [a ramp accessing 6 steps is impractical] and accommodations at my friends' houses, I would do it. But alas, I'm not a TrumpEnter the Home Modification or Visitability Tax Credit. This credit helps with home modification to allow a PWD to live in the community rather than suffer a homebound existence or -- worse yet -- life in an institution. And with people living longer, "aging in place" has become a choice, there is a need for accessibility for residents who use wheelchairs, walkers and canes as they age. The New York State Legislature has included the Visitability Tax Credit in both the Senate and Assembly's one house budget proposals! If you live in New York State, please follow the instructions below, to make sure the tax credit is included in the final budget! Tell Governor Cuomo To Support Community Living.Don't live in New York State or even in the United States? Find out if your state, city, county, province or national legislative body has a law like this on the books or in the works, If not, use New York State as a reference and try to spearhead an effort to legislate such an act in your area. It is an essential element in community living for PWDs.

Action: Call Governor Cuomo today at 518-474-8390 and urge him to support the inclusion of the Senate and Assembly's proposal for a Visitability Tax Credit in the final budget!

Rather than leaving a message, press # 3 to ask to speak to an assistant.Say: "Hello, as a person with a disability, I am calling to urge Governor Cuomo to support the inclusion of the Visitability Tax Credit, which was included in both the Senate and Assembly's one house budget proposals. This tax credit would help people with disabilities and older New Yorkers with the costs of making their homes more accessible and would allow people to age in place "

Wheelchair ramp leading to the main entrance of the South San Francisco Main Library, South San Francisco, California.

By BrokenSphere - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=3864507.- One no-step entrance- An accessible path to the door- hallways and doorways wide enough to accommodate a wheelchair- An accessible bathroom on the first floorThe NYS legislature passed similar legislation in 2015 and 2016. Governor Cuomo vetoed this legislation twice, indicating his support for the concept, but stating it had to be done in the context of the Budget. Unfortunately, Governor Cuomo didn't include this in his proposed Executive Budget.Background: The disability community has long advocated for New York to increase the accessible housing stock across the State by incentivizing the use of "visitability" design standards. This includes basic accessible features, including:

Last year, it was determined that there was a need to better understand the cost estimates for such a program. For this reason, the sponsors included a $1 million cap per year in aggregate to A.9303/S.6943. As the program would now be considered a pilot project, the State has five years to determine whether this cap is sufficient to meet the needs of the population.Due to the high cost of home modifications, many people cannot afford to make changes to their homes to make them more accessible, or to move to a more accessible home. Most prefer to remain at home rather than move to nursing facilities or different, more accessible housing as their needs change. However, many are forced out because their homes are no longer safe or practical for them to live in. This tax credit will help to ensure that people with disabilities and older New Yorkers are able to afford these modifications and remain in their homes.Click here to log in and send your message:|

Monday, March 27, 2017

So I ventured outside last Sunday for the first time in -- seemingly-- forever. We had a blizzard the previous week and I could see the NYC Sanitation trucks that were deployed to remove the snow drifts that had been formed by the plows during the snowstorm. More than half of the corner curb-cuts were still impassable and the ones that were passable, were deep puddles of melted snow. It was messy to say the least, but the weather was mild enough to make it a pleasant walk. All in all, I was happy to have ventured out, because sometimes it's just so much easier to sit in front of the computer or TV [or a combination of TV and hand-held device] and let time slip away. I'm still so baffled when people ask me "How do you fill your time?". Even as a child, I have had no problem filling time --there's always something to read or watch. Even when I was a little kid and Saturday and Sundays were TV deserts [even in the US], I could find an encyclopedia or magazine or newspaper to amuse me. In fact, that's how my obsession with crossword puzzles was born. These days, there simply aren't enough hours in the day for everything I love to read, watch and do.But this past Sunday on my outing, my aide was walking behind me, and I had no friend jabbering at my side. I had just my own silence and thoughts. And I noticed something I really never noticed. There seemed to be birds everywhere -- on the overhead wires, in the trees, and on roof overhangs. And there seemed to be thousands of birds flying in the air above me. And all around me, there was a loud symphony of tweets, chirps and caws. It was so loud that it was surreal!! It was almost as if someone hired an orchestra to replicate bird sounds, and play loudly all over the neighborhood.Now, I should explain about the area in which I live: it's part of New York City, but it's in an "outer borough" of Queens. When tourists come to New York, they might fly into two of the three NYC airports -- LaGuardia or JFK -- which are in Queens. But the majority of visitors usually hightail it to Manhattan, and will see nothing but concrete and skyscrapers -- until they visit Central Park. Where I live, there are stores and apartment buildings [most of which are not taller than six stories high]. And the streets are lined with trees, many of which are a half-century old or more -- from the time when my neighborhood was carved out of farmland after World War II. I love some of the old oak and elm trees on my block, and lately have been disheartened by some of them being chopped down replaced by younger and shorter shoots. I guess there are diseases that trees get and from time to time they are chopped down before they fall and do serious harm. But some of the trees in front of my building are so fare and developed that -- when fully foliaged -- they form a leafy umbrella over my street when they meet a tree across the street. These mature and stately trees are full of nests in the spring, for birds as well as squirrels. But that day, it really seemed as if the birds shared my thoughts: Finally, spring is here!! It was hard to tell if I was seeing thousands of baby birds or a combination of baby sparrows and the smaller starlings, but I saw a lot of babies flying low and on the ground, with cute little baby bird faces and softer, tuftier feathers. Why hadn't I noticed this beautiful noise before? Probably because I had so much of my own "noise' in my head. We truly have to all get outside, take our eyes and ears off the "devices' and just be with nature -- even on a city street. I didn't see too many squirrels-- maybe the little ones are still in their nests. But I love watching their antics when they do come out. It was nice to turn off the noise in my head and listen to noise of city nature.

Monday, March 13, 2017

For many people with chronic disease or disabilities [PWDs], exercise is essential, but getting to a gym is a much more complicated experience. Also, many PWDs do not have the stamina for a 60- or 90-minute workout or run on a treadmill. And for wheelchair-users, it's not easy to find a gym with wheelchair-accessible machines. PWDs are more at risk for obesity and the diseases that go with it -- diabetes, heart conditions, hypertension and blood clots [DVT included]. The best defense against these life-threatening conditions, is a movement program.

On January 2, many of you planned to shed the holiday pounds and shape up for the new year. And by now, many of you have failed. But the thing is we all have the time – we just don't know it yet. Patrick Striet, one of Self Magazine's 50 Hottest Trainers specializes in High-Intensity Interval Training and Metabolic Resistance Training. His meticulously designed program allows his clients to shed the pounds and build the muscle in no time flat. His new book THE 60-SECOND SWEAT will show you how to put his training and philosophies to work at home (or in the gym) by following the safe and effective program which is packed with exercises that are all done in a minute or less.

Reviews on Amazon have been raves. I personally found enough exercises that I could adapt to doing in a sitting position . And -- just as importantly -- the exercises in this book can be performed with light-weight dumbbells and/or resistance bands, which can be bought online for a reasonable cost. There is no need for expensive equipment, and can be done at home. I belong to a gym, but can't get there as often as I would like. The ability to fill in with a home-exertise program is very important to me.

For the past 15 years, Patrick Striet has run a fitness training facility where he has worked with hundreds of everyday men and women—working moms, college students, senior citizens, middle-aged men… plus a few elite athletes! Through this experience, he has identified the significant barriers people face when it comes to exercising consistently—lack of time, lack of results, injuries, boredom—and specifically designed the 60-SECOND SWEAT to address them.

Now Reader's Digest and Patrick Striet have teamed up to transform this HIIT and MRT training program into a book to help readers at home enjoy the same benefits Mr. Striet shares with his clients. The 60-Second Sweat is:

Effective: Research has shown that HIIT is more effective than traditional steady-state workouts for building cardiovascular fitness and shedding fat, while MRT builds muscular fitness, which is key for boosting metabolism.

Varied: You will never perform the same exercise or activity for more than 1 minute, so you will never get bored. Every exercise, set, rep…every minute…will help develop the best and fittest you!

Patrick Striet, CSCS is a Certified Strength & Conditioning Coach and the 15-year owner/operator of Cincinnati, OH based Live Fit Cincinnati, LLC, a boutique fitness facility specializing in customized private and semi-private personal training and online fitness and nutrition coaching. In addition, he is a freelance fitness writer who has written for numerous magazines, books and websites including Men’s Health, Men’s Fitness, The Women’s Health Big Book of Abs and livestrong.com. He serves as the fitness correspondent for 700 WLW radio, as an advisory board member and content contributor for prosource.net and, in 2013, was named one of Shape magazine’s “50 Hottest Trainers in the United States.” Patrick, who is also working towards a high level sports nutrition certification, lives in Cincinnati, OH.

Wednesday, March 8, 2017

By This photograph was taken by White House staff. As a product of the executive office, this image is in the public domain. - White House photo via www.technology.gov/Medal/2000/p_Photos-Clinton.htm, Public Domain, https://commons.wikimedia.org/w/index.php?curid=8304951

Ask anyone who has suddenly received a diagnosis of a disabling disease, "what was the first question or concern you had?" and they will probably recollect that they wondered "Will I end up in a wheelchair ?" For some reason, that thought overshadows almost every other concern, because that is the most discernible and visible thing we notice about any PWD with a movement disorder. Suddenly, that seems like the worst fate that can befall a human being, aside from death. And often, people express that death is preferable to "ending up in a wheelchair".

And sometimes the wheelchair-- or the idea of it -- is used as a threat. Huffington Post blogger Emily Ladau cites a perfect example in her 2015 article "Beware the Scare Tactics: Stop Negative Portrayals of Disability in PSAs" Emily cites a public service announcement [PSA] The PSA is about osteoporosis and urges its viewers to take care of bone health, or they will meet a hideous fate -- ending up as a wheelchair user . Click on the above link and read this wonderful article by a New York disability activist who tells it more eloquently than I ever could.

Says Emily "The ad shows a manual wheelchair being rigged to move via remote control, and then set loose in public while empty to chase people down. Combined with creepy horror movie music, the visual of an empty wheelchair moving on its own is meant to somehow convey the risks of osteoporosis". Oh, the devious wheelchair!! Out to get you and -- worse -- put your body in it for life!! And the PSAs tagline? "Beware the Chair!" Oh my God!! The wheelchair? Not the wheelchair! Oh God, don't let me end up in a wheelchair!

It's amazing how many people, upon learning of my diagnosis in 2004, asked "Will you end up in a wheelchair?" and not "Are you scared?" or even "Is there anything I can do to help?" I wonder if these same people would ask a friend who had been diagnosed with cancer "Are you going to die?"

Now don't get me wrong: I would rather be walking and not dependent upon a wheelchair, but I share Emily's sentiment that it's not something to present as a threat of doom. There are concerns that have come to bother me a lot more than the fact that I am a wheelchair user, the obvious one is that I have a disease for which there is no really effective treatment, is incurable, and always fatal. That last one is what freaked me out more than the wheelchair, believe me. My dreams blowing up in smoke at the age of 48 -- slim-to-none chance of ever having sex again or even finding a relationship at all, the fact that my friends and many relatives were running the other way, having to eventually share my tiny apartment with aides and losing my ability to speak -- just to name a few.

And this article made me think of other fates that are thrown in our faces, fates which often don't turn out to be as bad as we are led to believe. Like how many times did the adults in my life tell me that if I didn't change some aspect of my "behavior", I would end up unmarried. A dear departed aunt used to tell me that if I didn't "lower my standards" [her exact words] i.e. relax my criteria for a mate, I would "never find a man" and "be alone the rest of my life". and a variation of that was my frequent warnings that I needed to be tolerant of other people's lousy abusive habits or I would end up "a lonely old woman".

Well, I'm an unmarried woman in a wheelchair and I survive and even thrive. The depiction of the wheelchair as a fate to be dreaded is another stab in the back of me and every other PWD, and further contributes to our image as something to be pitied and an example of what you can become if you don't take care of yourself. What about you? Have you ever been threatened with a "you don't want to end up ____________ [fill in the blank -- in a wheelchair, a lonely spinster, a pathetic homeless person.........].

Friday, March 3, 2017

The Final Day is third in a series by New York Times bestselling author William R Forstchen featuring protagonist John Matherson; the first book in the series has already been optioned for a Warner Brothers movie. Months before it was even published, the first in the series -- One Second After was touted on the floor of the US Congress as a must-read book for all Americans.The riveting story of our nation's struggle to rebuild itself after an electromagnetic pulse
plunges the country into darkness, starvation, and death
was followed closely by the acclaimed One Year After, continuing the
Matherson saga. With
our nation still at odds over the result of the presidential election,
military historian Bill Forstchen offers something for both sides of the
political aisle in a riveting plot that has
citizens united in an attempt to preserve a beloved America. Like
its two predecessors in the Matherson series, this new novel
entertainingly blends folksy and sophisticated, small-town nostalgia and
sharp futurism...a
thoughtfully rendered, richly detailed investigation into the 'What
if.'" The
Final Day picks up after John Matherson and his community defeat the
designs of the alleged federal government. Now they have returned their
attention to restoring the technologies and social order existing prior
to the EMP attack. When the government announces that it is ceding large
portions of the country to China and Mexico, General Bob Scales is sent
to confront Matheson. The Constitution is no longer in effect, and
what's left of the U.S. Army has been deployed to suppress rebellion in
the remaining states.

General
Scales is John's former commanding officer and closest friend from
prewar days. Where do his loyalties fall? Might he be the crucial
turning point in the quest for an America that is again
united? When news breaks that members of the federal government knew an
EMP attack was coming long before it hit, the government might get
exactly what it fears: revolution.William
R. Forstchen is the New York Times bestselling author of One Second
After. He holds a Ph.D. in history from Purdue University, with
specializations in military history and the history of technology.
Forstchen is currently a faculty fellow and professor of history at
Montreat College, near Asheville, North Carolina.

Thursday, March 2, 2017

The short answer is that eventually, either you or your spouse or your parent or even your child, might find yourself or themselves in a position of no longer being able to self-care and self-manage. It's nice that more and more children are getting to coexist with grandparents or even great-grandparents, due to longer life expectancy -- I had a grandmother I never met because she died seven years before I was born and the other three grandparents died when I was in my late teens. I wish my grandparents were around when I was a little more mature and valued their histories and stories. But, along with the good fortune of older relatives living longer, comes the burden of their frailty and the need to care for them. Also, children with disabilities and serious illnesses can live longer than before, but often also need help. Especially children with neuromuscular diseases and diseases like Cystic Fibrosis and Cerebral Palsy, who formerly did not live into adulthood, now live many more years and continue to be valuable to their communities and the familiees. Ditto for adults diagnosed with formerly life-threatening diseases like AIDS and forms of cancer who might have died within months a decade ago, but are surviving longer. The need for community-based care will only increase; it is costly and impractical to expect family members to give up their lives to care for weak and disabled loved ones.

On February 13, people with disabilities [PWDs] traveled to Albany to meet with their respective assembly-members and state senators to lobby for more funding for community-based care. This was a tremendous sacrifice for the PWDs who went for a whole day in the freezing winter cold. Those who could not go to Albany -- like me -- will meet with our respective legislators during winter recess, here in their NYC offices. Like those who went to Albany, we will tell our story and present a case for higher pay for home health aides [HHAs]. A week later, PWDs attended a hearing in Manhattan about funding for home care. I am lucky to live in a district with legislators who are in favor of paying home health care workers a living wage. When I meet with them later in the month, I will be preaching to the choir, but many of my counterparts will have to do a harder sell.

So we have an increasing need for home healthcare workers. In fact, the field of community healthcare is expected to be one of the fastest-growing career categories for the 21st century. But what can a home health aide or home attendant expect to be paid? At present, the per-hour rate for a home attendant hovers around $11 an hour. And it's been at this level for about a decade. Has the price of groceries, fuel, utilities, rent or transportation stayed the same? Of course not. This means s/he can hope to make about $22,000 annually IF [AND ONLY IF] s/he works 40 hours a week [many HHAs work for agencies that give a lot less hours]. Lately, patients and their families -- especially in cities with high costs of living like New York and San Francisco -- have found it difficult or impossible to find good and reliable HHAs. The lower the pay, the less seriously an employee treats a job, and the less we can expect in the way of enthusiasm, skills and reliability. Indeed, many consumers [patients] hire a HHA, take the time to train him/her, only to have the HHA walk out with no notice.

So, you should care about making this line of work more attractive. And what's in it for the HHA besides being better able to pay bills and support her family? In the case of Consumer-Directed care [CD-PaP], HHAs do so much more than wipe butts [sorry, but I have actually heard ignoramuses refer to this as the job of an HHA]. Depending upon the consumer and his condition, it's a way to learn skills that will look great on a resume, especially for HHAs who want to go further in healthcare [many HHAs go on to become Certified Nursing Assistants {CNAs], Licensed Practical Nurses [LPNs] and even RNs and get jobs in hospitals or agencies]. For instance, my aides know how to transfer me, and use a Hoyer Lift and ventilator. They also do wound care and other nursing functions. In my case, they have become very knowledgeable about neuro-muscular diseases, feeding tubes and physical therap- and range-of-motion exercises.

Okay, so let's say we agree that HHAs must be paid more. Well, the powers-that-be do not agree. They need to be convinced to fund Medicaid and Medicare to pay this increase. Unless you have been living under a rock, you know that here in the United States we have a new administration, which includes a new president, a majority Republican Congress, and very conservative cabinet members, many of whom are very wealthy [billionaires, even]. Without getting too political, the present government and many legislators are not fans of increased funding to pay for community care. They think $11/hour is a fair wage for someone entrusted with the health and safety of YOUR loved one. Let me tell you in more detail than above, what happens with a worker who doesn't earn enough money to pay rent and support herself and her family : they have less respect for the job, may leave with no notice [often after investing a lot of time and patience training], AND may find it necessary to work another [or multiple other] jobs. The latter situation can endanger a patient - the HHA may be so fatigued s/he falls asleep on the job and therefore loses sight of a child or older patient with dementia, causing wandering -- or worse. A fatigued aide might even lose grip on a patient during a transfer and cause a fall. Inattention or lack of focus can be dangerous. Also, at such a low salary, consumers have to settle for a less-desirable and lower-qualified aide pool. Instead of getting an aide who enjoys the work and chooses to do it and learn skills, we risk getting someone who can't get anything better, and might resent what they look at as desperation. I am very lucky to have aides who have been working with me anywhere from 9-11 years, and are eager to learn any skills necessary. I am also lucky to have an assembly member and state senator who are advocates of community care and a living wage for home-care workers. When I meet with them later this month, I will be preaching to the choir.

In order for a working person to feel valued, he must be compensated appropriately. Furthermore, we must fund community care so people can stay in their homes and in the communities where they feel comfortable with their neighbors, and where many have resided for decades. In the coming years, we need funding for an increasing need for dedicated and contented home health care workers. This is one of those things I hope you will never need, but you may one day. Even some of the highest salaries cannot support decent home health care out-of-pocket, especially 24/7. I was told when I first received my diagnosis and was discussing with an acquaintance my concern about a future need for round-the-clock care: "Just get some illegal alien who will be happy for $200 a month and a pull-out couch to sleep on"........I found out this was not a good idea.